For National Sudden Infant Death Syndrome awareness month, doctors are looking at new research that could lead to positive outcomes for infants.
ST. LOUIS — October is Sudden Infant Death Syndrome Awareness Month, and even though SIDS is the leading cause of death in infants from one month to one year old, there is new research that offers promising news for families and doctors.
Researchers found that genetic markers often play many roles in SIDS-related deaths from brain, heart, and lung functions. Medical experts say these genetic issues could also be made worse if there are other risk factors like unsafe sleeping, maternal smoking, obesity or mild infections.
This new information could mean that genetic testing could be an important tool to prevent SIDS and keep those babies alive later in life.
“We now understand 22% of all SIDS cases, which is enormous,” said John Kahan, the founder of the Aaron Matthews SIDS Research Guild at Seattle Children’s Hospital. Kahan worked as Microsoft’s leading chief data scientist and has used the company’s philanthropic efforts to use data to find new findings centered around SIDS.
“The most important current research is that with a simple blood test, before a mother gives birth or after birth, you can do gene sequencing,” said Kahan. “And you can predict in advance if a child is going to have a high risk of SIDS, which is incredible.”
Kahan said researchers now understand there are genetic defects that occur, which also led to how his son passed away as an infant.
Neonatologist Bryanne Colvin does work centered around SIDS and safe sleeping at Washington University. She said the research is an exciting development.
“Many of the people that I work with in SIDS research have experienced that loss,” said Dr. Colvin. “That grief and that guilt lives with them forever, and to offer some answers is really important. It has a lot of value.”
Nonetheless, Dr. Colvin said it’s still important to educate families on safe sleep. In Missouri, she said roughly 60% of all SIDS cases were related to unsafe sleeping situations. If it’s discovered that an infant is predisposed to SIDS, then Colvin said it would be even more critical to make families aware of safe sleep.
“It would definitely be a double-edged sword because you don’t want to cause more anxiety for a family that is already anxious,” said Colvin. “But in many situations, families would want that knowledge just so that they can also then tell grandma who wants to put the baby on the belly and things like that.”
The research published in the American Journal of Medical Genetics also revealed that infants who were more vulnerable to Sudden Unexplained Infant Deaths (SUID), which includes SIDS, also shared similar genetic profiles found in adults who died from Sudden Cardiac Death. Every year, about 360,000 sudden cardiac deaths take place in the United States. Another finding, published in the Journal of the American Medical Association, suggests infants born to mothers with obesity are at increased risk of SUID. The research was done in a unique partnership between the Center for Integrative Brain Research at Seattle Children’s and data scientists at Microsoft.
“Our research indicates that genetic variants play significant and diverse roles in deaths from SIDS,” said Jan-Marino Ramirez, PhD, Director of the Center for Integrative Brain Research at Seattle Children’s, who was among the co-authors of both papers. “In many cases, multiple genetic variants that impact brain, heart, and lung function occurred simultaneously, making these children particularly vulnerable to die even if other risk factors are absent. Often, however, these genetic vulnerabilities appear alongside other risk factors such as maternal smoking, prone sleeping, obesity, or even mild infections.”
Ramirez predicts that genetic testing will become an important tool not only to finally explain SIDS but also to prevent it and other forms of sudden death later in life.
“The impact can be huge, given that more than 1,000 people die daily, suddenly, and unexpectedly,” he added.
“So if you find this early enough, you can actually test for it and help them have a long life,” said Kahan. “It’s incredible, and we weren’t looking for it. You can literally find somebody before they have a problem and track them through their whole lives and do something about it, which is really cool. So, all the work is very meaningful.”
Colvin said she’d like to one day put the research into practice, though it’s not quite there yet.
“It’s not ready for prime time yet,” said Colvin. But she is hopefully there would be a test, like a state newborn screening, where doctors could identify genetic markers in an infant’s first days of life.
Until then, Colvin reminds families to exercise the ABCs of safe sleep. She said people need to remember: A stands for alone – the only thing that can be in a crib is a pacifier. B stands or back. Babies need to be placed on their backs when it’s time for bedtime. C stands for crib, and Colvin said what that really means is that babies need a place that is flat and firm, so nothing that props the baby upright like a bouncy seat or a car seat nor anything squishy like an adult bed or pillow.
“All of those things can lead to what’s called positional asphyxia,” said Colvin. “So, chin hitting chest, that tiny floppy airway kinking over like a straw—they can suffocate.”
As research and awareness continue, Kahan is also trying to raise money to help fund SIDS research. He and his wife Heather co-wrote a kids book called “This is Your World, Too.” It’s a book that shows John’s wildlife photography and highlights animal kingdom families in hopes of exploring and appreciating the world we live in. All of the proceeds will be split between the World Wildlife Fund and the Aaron Matthew SIDS Research Foundation of Seattle Children’s Hospital.